Reality Bites

Friday, November 5, 2010

NaBloPoMo - Day 5

Good Morning, Ladies and Gentlemen. This is your captain speaking. I wanted to give you a little "heads up" about today's trip. I don't know exactly where our destination is. And I'm not sure how we're going to get there. I can, however, assure you that there will be turbulence. The flight attendants and I have had little to no sleep and so we may be a bit surly. We are feeling a little.... oh, angry, exhausted, drained.... today. Bear with us. Today's in-flight entertainment is also uncertain. It could be a mystery, a drama, a comedy, a tragedy... or all of the above. I'm not sure what is in store for us today. All I can promise you is that we'll be honest with you - every step of the way. I wanted you to be aware in case you decide to deplane. If you're looking for an inspiring, uplifting flight - you might want to look elsewhere today. If you're up for an adventure, please buckle up and get ready. Here we go...

If you read my post yesterday, you know it was not the most stellar day we've ever had. And unfortunately, it didn't get any better.

When I last left you, Sweetpea's pump was alerting us to an "occlusion". So.... we decided to do a full site change. Yes, another one. That done, we went to bed. NOT. Well, I did. J had the night shift last night. A few minutes later, Dexie beeped and was ready for her 2 start up bg's. This is usually a non event. However, she would not accept the numbers she was given. J tried 5 times before he quit testing and just entered the number. FINALLY, it accepted the bg.

After a day of low, low, lows, Sweetpea had rebounded. A little too well. She'd had the pump off for bath and then for a little while when she'd ripped out the old site. I had corrected her at bedtime. She was 403.

When J entered the numbers, she was in the 300's. We thought she was coming down. It had not been that long since I had corrected her and she'd not been getting insulin for around an hour before the occlusion was detected. J checked overnight. She was steady in the upper 200's. He corrected again before going to work.

When I got up, Sweetpea was 220. She said she didn't feel good. Her tummy hurt. I gave some thought to staying home... but I really needed to go to work. Her constipation issues often make her belly hurt and we've been battling that since Halloween. She said she was hungry. She ate breakfast and we went to school.9:40 am. Sweetpea is in my room. Bg is over 400. She has been thirsty all morning. Her belly hurts and her head hurts. You can look at her and tell she is not well.

Crap on a stick. I'm not messing around. I'm ripping out that site and putting in a new one. Sweetpea starts crying. We excuse ourselves and go to the clinic. I call J. We decide that she needs new insulin. Could be that insulin is bad. It's about time for a fresh bottle. I put cream on her and he leaves work to pick up the insulin and get to school. His commute is 45 minutes.Sweetpea is a complete mess. She doesn't feel good. She's scared. She's crying. She stays with me while I go back and teach a reading group. Somehow, she pulls it together and participates!

We go back to the clinic and she lays down. Ketones are 3.4 and bg is 450. I'm starting to get worried.

If you're wondering how I'm doing this at school, I have an excellent co-teacher who is handling the class. Thank goodness! I know they are learning and in good hands.J gets to school. I give her a shot with the new insulin. I have not given a shot in over a year. Kinda like riding a bike.... We change the site. Then we go home.

3.4 scares me. That's LARGE. Very large. I give it an hour. If she's not coming down in an hour, we're calling the hospital and most likely going to the ER.

Luckily, that insulin has a kick. She comes down. Crashes, really. But I'll take it. I catch it at 100. You can see her starting to come back to herself. Crisis averted. Today.What do I say about this day? This week?

All I can think of is this... reality. Hard reality. This is life with D.

Sometimes it's like a fly in the house. It bugs you. It reminds you that it's there and is annoying. It demands attention - especially at meal times. But in between, you can almost forget it's there. Almost forget that it's flying around. It's fairly harmless.But sometimes D is like an angry swarm of hornets that you stumble upon. You didn't expect it. But there they are. A violent, angry mass - heading straight for you. Threatening you. You can't ignore it. You can't pretend it's not there. It occupies every thought. Every moment. You just take cover and pray that it leaves you alone. Pray that you don't get stung. Because we all know what happens when you're stung too many times...

This week, we've had hornets.And that's reality.

Most people hear "diabetes" and they think it's nothing. No big deal. A diet change. A shot or two. Controllable. Easy. Safe.They see it as a fly.

But we know better, don't we? We see hornets.

This is the reality of diabetes.

It's not safe. It's not easy. It's not pretty.

It's 5 juice boxes in the trashcan. It's a mountain of used test strips on the bedside table.

It's bloody tissues.

It's needles, and insulin, and sites, and sets.

It's knowing how to handle a syringe.

It's telling your crying child that you are very sorry, but you have to change the site - again.

It's wanting to break down and cry because you are so incredibly frustrated and tired and angry.

It's holding it in because you can't let yourself fall apart. You have work to do.

It's having to make a decision between work and your child.

It's having to consider the fact that you used ALL your sick days when she was diagnosed and now you have practically none left. Hardly enough to get you through the year. So each one must be carefully considered.

It's spending $2 on ONE test strip to tell us a ketone number.

It's spending a crap load of money on supplies - and being grateful for each and every one.

It's knowing that only a few people really understand WHY you have to leave work early.

It's holding your breath - waiting for a number.

It's knowing that a trip to the ER is a distinct possibility.

It's worrying when she falls asleep in the car that she's actually passed out.

It's knowing that even though you do everything right - things can still go horribly wrong.

It's the fear of knowing that this can happen in an instant.

This is my reality.

And the reality is that yes, this was a bad week. But also that it's not just some fluke, once in forever kind of thing. It happens. It happens more often that I'd like to admit. Things go awry.

I'm so tired of explaining to well meaning people that she is not magically going to get "under control". It's not like one day she'll wake up and this won't happen. I think I could talk until I was BLUE (appropriate, no?) trying to explain that even when you do everything right, everything can go wrong.

Sometimes I feel like I'm trapped in some kind of horror movie. And I'm trying to tell everyone that there's a killer on the loose. But no one will listen. They all think it's no big deal. They all go off by themselves when that scary music is playing. Idiots.

I'm a mix of jumbled emotions tonight. I feel a sense of being resigned to the fact that this how D rolls. Like it or not. I feel a sense of urgency to get people to understand the REALITY that is life with D. And I feel angry. Angry that this monster is messing with my baby. Angry that she's having to deal with feeling the effects of his temper tantrum. Angry. Angry. Angry. Angry that I can't make it all better. Angry that it's her and not me. Angry that it doesn't play by the rules. Angry that doing everything "right" isn't always good enough.

The reality of life with Type 1 diabetes is not all smiling children. It's not all warm fuzzies and Hope and walks and fun. Those things are great - thank God for them.

But the real reality of life with Type 1 D is that it is, at times, dark. Lonely. Scary. Never ending.

The reality is that I'll find a way to work through all those emotions (diarrhea blogging, helps - so thanks!). I'll check my sweet, sleeping angel in the middle of the night. I'll keep on trying. And I'll wake up tomorrow with fresh resolve.

15 comments:

((Hugs)) I believe diabetes is the toughest disease out there. We've ran across a few nasty ones in our family - cancer, amputated limbs, loss of sight, bowel removal, hemophilia...seriously a crap load of not so fun things...but nothing is like this. I pray daily for all of our children.I am thankful daily that our babes have people like you to make quick decisions that keep them safe. I am thankful for the options to treat our children, too.Keep your head up, know you're not alone. Thinking of you today. :)

"Diarrhea blogging helps". lol After reading through this and feeling and sharing your pain, that brought a smile to my face. I'm glad you are able to keep your sense of humor. Though the reality is that it can be dark at times, often we can start another day fresh and clean. That's what gets me through it sometimes. Hugs again to you Hallie. :)

Oh Hallie..it IS like a horror movie at times. AND like an angry swarm of hornets. I so wish it wasn't. Sounds like a rough week. Sandpaper rough. I know what those are like first hand. A big hug to you friend.

Poor kid! What a rough week. Only posting because of your comment about having used up all your sick days. If you have not already done so, I would immediately apply for intermittent FMLA (FMLA can be used on an intermittent basis for doctors appointments and the occasional sick day). You may have to use up some vacation time or take a no pay but they cannot fire you. You do not have to use FMLA all at once by taking three months in one fell swoop and you can reinstate it each year. FMLA does not apply to all jobs, though, and I think you have to have worked for a full year with your current employer. Hope you can use the FMLA, this year if not next. Sounds like an absolute nightmare dealing with this during work hours and your child in school.

Wow, I don't know how you're still standing. And seeing 3.4 on the ketone meter would have scared the crap out of me. You're doing a great job, Hallie... I hope that things get better soon. HUGS! And give that sweet girl a hug from Elise and I.

My sweet 7 year old girl was diagnosed three weeks ago and in searching for answers and information I happened upon your blog. Thank you for your honesty and heart to share your journey. You have made it easier to process the blur our last three week's have been and helped me to have grace and understanding when people say ridiculous things that later make me cry. I am sorry that this week was all hornets and I hope things are getting better. Hugs to you and your family and thanks for being a voice of truth that speaks to the reality that this new normal is. Denine

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* Disclaimer *

I am not a doctor. I just play one in real life!

I am happy to share with you what works (and what does not) for us as we do battle with Diabetes. However, keep in mind that this is just my opinion and should, in no way, be taken as professional medical advice.

Please contact your doctor or endocrinology team before changing your current treatment.